Action Duchenne

Ahead of our conference next week, here's another staff introduction! Ravi Mehta is our Project Engagement and Support Coordinator and heads up our 'Yes I Can' Transition to Adulthood programme. Ravi lives with Duchenne and is passionate about sharing his experiences to help others. "As a person living with Duchenne Muscular Dystrophy, I have an ingrained understanding of how people feel living with the condition and the families that are also affected. I feel that this has put me in good stead to help others." Ravi will be leading our Transition to Adulthood session in the 'Living with Duchenne' stream on Saturday 9th November. He'll be joined by Benjamin James and Jack Bosanquet. This session is one not to miss as they share their lived experience of further education, living independently, transitions from primary to secondary school and beyond, tips on maintaining wellbeing and mental health, the importance of peer to peer support and social connection and more! For any parents of children or young people living with Duchenne as well as young people themselves, this invaluable session will leave you with answers to many of your questions as well as real hope for the future. There's still time to join us: https://bit.ly/ADConf2024 #ADConf2024 #support #community #knowledge #power #transitiontoadulthood #yesican

With less then 2 weeks to go until the Annual Action Duchenne International Conference 2024, it's time to introduce another member of our AD Team. Alex Berbank is our Outreach and Partnerships Manager, and many of you will recognise him from our Science on Tour Workshops, school visits, DADs group or support calls. Alex will be there over the 2 days to meet families, offer support, have a chat or help you find the information you need. You'll probably find him over at our brand new Pit Stop area as well as in our Living With Duchenne and Wellbeing streams. Have you booked your tickets yet? https://bit.ly/ADConf2024 #ADStaff #MeetTheTeam #ADConf2024 #support #community #welllbeing #information #understanding

Just 2 weeks to go! We can't wait to see you there! Educating, Connecting, Wellbeing There's still time for YOU to be a part of it. REGISTER: https://bit.ly/ADConf2024 #ADConf2024 #foreveryone #duchennescience101 #wellbeing #theduchennejourney #support #community #research #updates

This year, one of our 3 content streams is dedicated entirely to wellbeing. From how to talk to your children about Duchenne, neurodiversity and learning difficulties, mental health and psychoocial care, to hearing from our community panel about how to cope with transition stages, we've covered it all. And then we've got our brand new Pit Stop area, where you can take some time out, have a chat to our counsellors or our staff, or just sit with a cup of tea in the quiet. There's still time to book your tickets to learn from the experts, hear from those who've been there and feel understood by those who are going through it with you. Educating, Connecting, Wellbeing REGISTER - FREE tickets for everyone living with Duchenne and Duchenne families. 8th and 9th November 2024. https://bit.ly/ADConf2024

As schools around the country are are either enjoying their half term break or coming up to it, we want to make sure you know that we are here to support you. We have loved our recent trips into schools where we've done whole school assemblies focussed on inclusion, disability awareness and explaining Duchenne, interactive classroom activities for different key stages and staff training. We can also off ongoing support through the EHCP process and to increase awareness and understanding through the Local Authority. If you'd like us to come into your child's school, or you're a professional within an education setting who would like more information about how to support a family living with Duchenne, we'd love to help. Get in touch on info@actionduchenne.org #schoolsupport #information #knowledge #inclusion #awareness #understanding

Ahead of our 2024 International Conference on 8th and 9th November, we are continuing to introduce you to the AD staff team who will welcome you. Florence Boulton joined as CEO in 2020 and is passionate about creating a lasting impact for the Duchenne community and remains committed to fostering hope through support, advocacy, and research. The conference is a crucial part of our mission as a charity, and Florence can't wait to see you all on the 8th and 9th November. There's still time to make sure you are part of it! REGISTER: https://bit.ly/ADConf2024 #ADConf2024 #foreveryone #research #updates #support #community

Our 'Living with Duchenne' stream at the Annual Action Duchenne International Conference has an amazing combination of experts, lived experience and shared experiences from within our community and is centred around what living with Duchenne REALLY means for you and your family. We've got EHCP's with Treloar College, Housing Adaptations with expertise from those who've been there and done it as well, physiotherapy with Marion Main from GOSH, Accessibility for travel, gaming and sport with Pathfinders Neuromuscular Alliance and a session with trained counsellors addressing the issues facing couples when you child receives a Duchenne diagnosis. There's still time to book your tickets to learn from the experts, hear from those who've been there and feel understood by those who are going through it with you. Educating, Connecting, Wellbeing REGISTER - FREE tickets for everyone living with Duchenne and Duchenne families. 8th and 9th November 2024. https://bit.ly/ADConf2024 #ADConf2024 #support #livingwithduchenne #accessibilty #inclusion #equity #foreveryone #community #information #knowledge

In just 3 weeks time, we will be welcoming you to the Action Duchenne Annual International Conference 2024. Educating, Connecting, Wellbeing There's still time for YOU to be a part of it. REGISTER: https://bit.ly/ADConf2024 #ADConf2024 #foreveryone #duchennescience101 #wellbeing #theduchennejourney #support #community #research #updates

Meet another one of our amazing staff team who will be there to welcome you to the Action Duchenne Annual International Conference on the 8th and 9th of November. Lots of you will have already met Victoria, our Fundraising and Support Officer, through all of the brilliant fundraising you do. Victoria is also a proud mummy to Dougie, who lives with Duchenne, and Allie. She'll be sharing her experiences in the Newly Diagnosed Parents session on Saturday afternoon as part of our Wellbeing stream, as well as being there to support you throughout the conference. Sharing lived experience is one of the most powerful parts of our conference, letting you know you're not alone and that there's always a way forward. 'Educating, Connecting, Wellbeing' Have you registered yet? There's still time to join us: https://bit.ly/ADConf2024 #ADConf2024 #Support #Genetics #Research #ForEveryone #Wellbeing #Educating #Connecting

The Action Duchenne Annual International Conference 2024 has 3 content streams running simultaneously over the 2 days. Our Duchenne Science 101 stream covers everything you need to know about understanding the latest research, treatment updates and developments in the standards of care for Duchenne, all delivered by leading experts. Educating, Connecting, Wellbeing Are you joining us? REGISTER: https://bit.ly/ADConf2024